Special needs

My boys’ obsession with Ghostbusters began one afternoon when I was trying to do yoga alone in my bedroom. The movie’s theme song came on, having somehow made its way onto my Soothing Instrumentals playlist. The boys stormed in. Soon the three of us were flying around with towels and blankets thrown over our heads, spooking one another and shouting out, Who Ya Gonna Call?

Since then we’ve listened to the song countless times, purchased Ghostbuster action figures and even built a model of the Ecto I. Perhaps against my better judgment, I let the boys watch a snippet from the original movie: the scene when Slimer – the putrid greenghost with an obscene pink tongue – first makes its appearance. At the instant Slimer charges Dr. Venkman, ensnaring him in green goo, Ted ran out of the room screaming. Tommy grinned and said, “I like Slimer.”

Although he hasn’t asked to see the movie again, Ted’s preoccupation with the paranormal continues. He has endless questions: What are ghosts made of? Where do they live? Are they real? He is both intrigued and unnerved by these invisible beings floating through space, haunting us and wreaking havoc on the material world, somewhat similar to the anxieties he must face every day.

I didn’t know until recently the extent that Autism and anxiety can overlap. Many of the bizarre and disruptive behaviors exhibited by A.S.D. kids are actually rooted in anxiety. The list of my son’s anxieties is ever-expanding: the dark, crowds, unexpected noises, changes in routine, odd foods, and now, thanks to his mother, green ghosts that slime people.

Anxiety is also a big part of raising a child with a disability. My own fears often well up at night, like the ginormous Stay Puft marshmallow ghost. I am visited by apparitions from the future: Ted, five years from now, still trying to correctly identify the letters of the alphabet, stuck in a self-contained classroom or kicked out of school altogether because he’s “too difficult” to manage. Ted, age twenty, struggling to complete high school with no job prospects and unable to live independently. Then I move onto Tom who’s showing some of A.S.D.’s telltale signs: massive meltdowns, food and auditory sensitivities. Oh no! my inner ghost taunts, What if he’s on the Spectrum too?

I wake up from these restless nights in a state of sticky paralysis, as if I’ve been slimed. I’m liable to transfer this viscous anxiety onto my children. There are times when I push them to perform in order to alleviate my anxiety, forcing Ted into more handwriting practice (another area of delay) or insisting Tom eat everything on his plate just to prove to me he’s not a picky-eater. In my desperation to be reassured that they will be okay, I end up communicating to them that they are somehow not okay.

These moments call for some serious ghostbusting. For me, that means refocusing on what’s real. What’s real is Ted’s smile, his laughter, his sly sense of humor and his wicked morning breath. What’s real is that, yes, he has some significant challenges but we’re working on them and he’s showing progress. What’s real is that Tom is a stubborn three-year-old who throws fits and sometimes refuses to eat. He’s also sociable, confident and positively gleeful. When I get the slime out of my eyes and focus on the real flesh and blood children before me I see that, in actuality, they’re doing just fine.

Yesterday, the kid’s “Deluxe Ghostbuster Costumes” arrived via Amazon. These full-body jump suits, complete with ghostbuster emblem and inflatable proton pack, promise to take their ghostbusting to a whole new level. Now the boys can suit up, turn on the theme song and zap away all those pesky ghosts that keep us up at night – while I try to do yoga.

I didn’t grow up riding a school bus. I lived in a small town and everyone walked to school together. It wasn’t until college that I heard the term, he (or she) rides the short bus. Someone had to explain it to me.

My son rides the short bus, or at least he did last year when he attended a developmental preschool (one for kids with disabilities) a few miles from our home. Now that he’s started kindergarten he can walk to his neighborhood school. He’s lucky to attend. Many disabled kids in our district can’t attend their neighborhood school either because it lacks services or all the special education seats are filled. Instead, these kids are shuttled around the city in short buses, often to segregated or “self-contained” classrooms.

Ted was three-years-old and newly diagnosed with Autism Spectrum Disorder when the short bus pulled up to our house. I rode along with him that first day. I expected the bus driver to be friendly and empathic. She wasn’t. She huffed impatiently as I struggled to loosen the seat buckles. We rode past other moms walking their children to school. Ted and I were the only ones on the bus for most of the ride. I felt intensely lonely, as if I had been sealed off from the normal world the moment the bus doors shut.

I soon got to know other parents of kids with disabilities. We’d wave whenever we ran into each other at the preschool, picking our kids up for afternoon therapies or dropping them off late due to a morning meltdown. We naturally became friends, having in common the unique experience of raising a child with special needs. I felt a warmth toward these parents that I didn’t feel for the parents of so-called typically-developing kids. I was, and still am, jealous and resentful of those who seemed to have had a smoother ride.

Now that Ted has entered his neighborhood school, I’m surrounded by parents who don’t share my experience. Their parenting journey has been very different from my own. I find myself keeping my distance, not joining in the group conversations or parental huddles that form every afternoon outside the kindergarten classroom. I tell myself that these parents haven’t been through what I’ve been through. How much could we have in common?

I gravitate instead toward the handful of parents at the school who also have a child with special needs. We share stories, swap resources and moan about other parents who just don’t get it. It’s easy to take an us versus them mentality when there’s so much about our lives that these other parents can’t understand. They’ve never had to watch their child board the short bus and confront all that it foretells about their child’s future and chances at a normal, happy life.

Then it dawns on me that it’s this focus on difference that has led to separate education for kids with disabilities: separate schools, separate classrooms and even separate buses. My son is more alike his classmates than not. He’s a child first and foremost, just as I am a parent like all those other parents. Even our differences don’t have to exclude us unless we let them. When I keep myself apart from the community, I buy into the idea that different inevitably mean separate. My standoffishness doesn’t do me or my son any favors: it keeps us on the short bus rather than taking us off of it.